Monday, August 24, 2015

I dropped my oldest son off at college last weekend. All week, I had been busy planning for a semester start of my own,
putting the final touches on my English Composition fall syllabus for first-year
students, a class I love to teach because it opens students' eyes to the
possibilities of writing, to the power of communication. And then, my phone
buzzed with a text message from my son: “It is really hard to say goodbye to
everyone.”

I remember that feeling.

Parenting is hard. This oldest child of mine, like all
oldest children, was an experiment, a very wanted child, but also an
unknown. I was in graduate school when I
learned that I was pregnant. I thought I would just deliver my first baby over
spring break and return immediately to school a week later. He was born just
six hours after I turned in my grades for the History of Rome section I taught
as a UCLA teaching assistant, just six days after I successfully defended my
academic work in comprehensive written examinations, struggling with
Braxton-Hicks contractions as I labored (figuratively and literally) to translate difficult
Greek passages and apply them to theoretical contexts.

For me, motherhood changed everything. Puer natus est, the Roman poet Virgil wrote in his

Fourth Eclogue
about the birth of Augustus Caesar, destined to be the first Emperor of Rome.
“A child is born.” Is there a pronouncement more existentially profound?

My first child was obsessed with the space shuttle
before he was two. He built rockets, first from Legos, then with real rocket
fuel he cooked in my kitchen with sugar and cat litter. From an early age, he
studied everything he could find about the Titanic, informing me as a
preschooler that he would only watch documentary films, because “fiction is not
true” (I beg to differ: sometimes it seems to me that fiction is more true than
so-called facts).

When he was four, he swallowed a quarter because he wanted
to know what it tasted like and earned his first (and last) ambulance ride.
When he was 14, he broke both arms in a frightening parkour accident: My first and
most urgent question to the emergency room doctor: “How is he going to wipe his
own bum?” His younger brother had been in the same emergency room just two
weeks earlier, transported by ambulance after a violent behavioral episode
associated with mental illness.

I did not follow the plan and return to graduate school the
week after my oldest son was born. I stayed home for 12 years to raise him and
his 3 siblings. Nor did I plan on his father divorcing me. But when that
happened, I gradually picked up the pieces and moved on. A few years later, I
started an online doctoral program in Organizational Leadership (my kids describe what I study as “Advanced Manipulation Techniques”), and
now, as my first son prepares to start his first year of college, I am
preparing to defend my own doctoral dissertation proposal on mental health
advocacy and leadership. We put many of our personal goals on hold when we become parents, but I'm glad I've returned to mine.

The family jokes that my oldest son is the future president of Mars.
It might not turn out to be a joke. He certainly has the drive, the talent, the
ambition.

But in so many ways, I feel like I have failed him.

His younger brother’s struggles with then-undiagnosed mental
illness, coupled with a difficult divorce, defined our family in ways that I
wish, as a writer, I could revise. Mental illness affects the whole family, and
I think the sibling experience has not yet been adequately chronicled or
supported.

And at age 18 as commencement speaker at his highschool graduation.

Still, as Dante said, we are a part of all we have met. My oldest son has met and conquered many challenges in his formative years, and
I know that he will continue to achieve at a high level as he begins his
college experience.

For my part, as I loaded up the Suzuki with boxes of his clothes
and books and Star Trek models, I just wanted him to have fun. To be safe. And to
learn to be happy.

Right before I left him to begin his new phase of life, I gave my son a journal inscribed with this message:

“I’m not sure whether this means I’m a good parent or a bad parent,
but I am really ready for this day—the day I officially get to hand your future
off to you. I’ve watched you grow up to be brave, capable, and incredibly
talented. Now is the time to be curious, to explore the world of ideas. I went
to a relatively crappy college in a crappier town than your school, and I ended
up loving every minute of it. The books I read in college are still my favorite
books. The friends I made are still close. But most important, college made me
the person I am today. Be curious.P.S. Keep a journal! You’ll laugh really hard at what you
wrote when you’re my age.”

As I turned to walk away, my cheeks were wet with tears. I blamed the moisture on the smoky air from all the Idaho wildfires. But my son and I both knew differently. His future is now his.

Tuesday, August 18, 2015

How a Single Juror Made All the Difference to Families of Children who Have Serious Mental IllnessLike many Americans, I held my breath on Friday, August 7 at 5:00 p.m. as I waited for the verdict to be read in the James Holmes case. No one questions that Holmes shot up a movie theater in 2012, killing 9 innocent victims and injuring 70 others. And few question that Holmes met Colorado’s legal definition of sanity when he committed this violent act. Similarly, few question that Holmes suffered from schizophrenia, an incurable mental illness with sometimes violent behavioral symptoms.The only question in that moment for parents of children who have serious mental illness, parents like me, was this: would Holmes be sentenced to death for behavioral symptoms of a brain disease?One juror found that outcome to be unacceptable. One juror saved James Holmes’s life.And while the Internet swirled with hateful comments, mothers across America breathed a collective sigh of relief. Three of these mother wrote letters to the lone juror and shared them with me.Leisl Stouffer of Bold Faith Ministries has watched her son’s dramatic improvement with residential treatment, something few parents can access. She wrote this to the lone juror who had the moral courage to save James Holmes’s life:

I will never forget the morning I woke up to “Breaking News.” A movie theater. A gunman.

Carnage. Death. Slowly the details emerged as we all sat in shock over the latest mass shooting. And then the media showed us his face. James Holmes. The cold blooded killer with the bright orange hair.

But I saw more than his hair. I saw the look on his face. I saw his eyes, and I was rocked to the core.

That empty, faraway look. Glazed over. No emotion. They say the eyes are the window to the soul. This man’s eyes revealed a look into his mind. An abyss of darkness. A chasm of illness.

Mental Illness.

I had seen that same look in my own home.

Laura Pogliano’s story was profiled in a USA Today series on caring for children with mental illness in November 2014. Then, she called herself a “fortunate mother” because despite the enormous financial costs of obtaining care, she had been able to get treatment for her son Zac. Just a few months later, Zac died at the age of 23 of heart failure. Laura wrote this to the lone juror:

When the final sentencing verdict was read, I cried. Instead of the death penalty, Holmes was given life without the possibility of parole. A juror spokesman related afterward that a single juror refused the death penalty as an option. One out of seventeen. This lone juror’s refusal to put Holmes to death is probably the only reason Holmes was spared.

My son was seriously mentally ill with paranoid schizophrenia for seven years before he died at age 23 of heart failure. If I could say anything to the Lone Juror, here’s what I would tell him or her:

Thank you for sparing James Holmes’s life. By refusing to agree to the death penalty, you reminded us all of some important things we used to know as a nation but seem to have completely forgotten in the last 40 years.We have forgotten that treatment matters more than any single thing in a desperately ill person’s life. We evolved into a culture where it’s okay to ask for help with any disease except mental illness. With every mass shooting that we trace to untreated mental illness, with neighbors and friends all saying they saw a need for help, we grow more and more callous to the idea of treatment.

The national chorus after a tragedy is, “why didn’t he get treatment?” By refusing to put James Holmes to death, you reminded us that he could have been saved by treatment. And you’ve shone a light on the very real deficits this country faces with our broken mental health system and very real barriers to care. Thank you for shining this light.

Diana Mandrell’s daughter also has a serious mental illness. Her family has struggled for 15 years, trying without success to find effective treatment for her daughter’s psychosis. Her daughter is currently on probation for misdemeanor assault. The family has been told their daughter must commit another crime before she can be committed to a hospital and get treatment.

I am the mother of a child who has serious mental illness, and I wanted to thank you for allowing James Holmes’ parents to keep their son alive. I know the pressure must have been very hard on you to vote for the death penalty, and I want you to know that I think you made the right decision. I know that what James Holmes did because of his disease was horrible, and my heart goes out to the victims and their families, but I also know that James and his family are also victims. They are victims of a mental health care system that is not only broken, but shattered. I know from experience that it is almost impossible to get treatment for patients with mental illness who cannot recognize their own illness. In this case, the fact that James did know and tried so desperately to get help shows that the system is even more broken than one might think.

These parents’ stories are not uncommon, yet in the wake of Holmes’s sentence, many people attacked the brave juror. People also continued to blame James Holmes’s parents. As parents of children who have serious mental illness, we are distressed that two-thirds of the jury apparently thought death was an appropriate sentence for a young man who had schizophrenia and acted out his awful delusions. We are profoundly grateful to the lone juror who stood up for what she believed in—that death is not an appropriate punishment for someone who has a brain disease. And we have hope that Congress will take action and pass HR2646, Representative Tim Murphy's much-needed mental healthcare reform legislation, before the next Aurora. Or Chattanooga. Or Lafayette. But mostly, we hope for meaningful change before another one of our precious children becomes homeless, or is jailed, or dies by suicide because of an untreated brain disease. These are the private, everyday tragedies of mental illness, tragically overshadowed by the rare and awful mass shootings that raise awareness but also contribute to fear and discrimination. We can each be the lone juror, speaking up for help and hope for the most vulnerable within our communities.The mothers' full letters are reprinted here, with the authors’ permission:To The Juror Who Spared James Holmes’ Life:Thank You. Thank you for your willingness to sit on a jury in such an emotionally charged and high profile case. Thank you for taking time away from your family and your life to serve justice. But most importantly thank you for standing firm in your convictions to spare James Holmes’ life.In a case as horrific as this, it would be easy to say that the only true justice is death. It appeared to be cold blooded murder. Lives were lost. Lives were destroyed. Dozens of families will never be the same. The aftermath is unthinkable. Our human response is to call for vengeance. A life for a life equals justice.But from where I’m sitting, I see things differently. I will never forget the morning I woke up to “Breaking News.” A movie theater. A gunman. Carnage. Death. Slowly the details emerged as we all sat in shock over the latest mass shooting.And then the media showed us his face. James Holmes. The cold blooded killer with the bright orange hair. But I saw more than his hair. I saw the look on his face.I saw his eyes and I was rocked to the core.That empty, faraway look. Glazed over. No emotion. They say the eyes are the window to the soul. This man’s eyes revealed a look into his mind. An abyss of darkness. A chasm of illness.Mental Illness.I had seen that same look in my own home before.I am the mother of a 17-year-old son who suffers from severe mental illness. We have been battling this horrific and devastating disease for almost his entire life. He is currently living in a residential treatment center where he is doing well and regaining his health, his dignity, and his life. He used to have that faraway look in his eyes. We had lost our son to the illness. But now, with treatment, he has life in his eyes. He laughs. He smiles. There’s a twinkle. There is hope.When I saw the image of James Holmes flash across my television screen, I did not see a cold blooded killer. I saw a young man just like my son. A young man who was unimaginably sick. I certainly do not condone his acts or the horrific crimes that were committed, but I saw James Holmes as a victim in this too. He is a victim of a terrifying and gravely misunderstood illness. He is a victim of our nation’s failed mental health care system. This system refuses to provide treatment until the person is deemed an “imminent danger to self or others.” By that point, it’s too late. I don’t know why you decided to spare James Holmes’ life but I am thankful you did. The few articles and news stories I have seen report that the issue of mental illness played a significant part in your decision. If that is indeed the case, thank you. From the bottom of this mother’s heart, thank you.We will never get back the lives that were lost, and for the victims and their families, life will never be the same. But because of you, another life was saved. My heart goes out to everyone involved in this devastating tragedy. If we want real justice, then let’s start by fixing our mental health care system. That will bring real change.Love and blessings to you, the Juror who spared James Holmes’ Life. I am grateful. Leisl Stoufer***Dear Juror:Like many parents of a child with mental illness, I waited with suspended breath for the verdict in the James Holmes murder trial. Holmes was found guilty of murder on all counts. He was not found “not guilty by reason of insanity,” but guilty, legally sane, meaning Holmes qualified for the death penalty in Colorado. The jury did not find enough mitigating circumstances, even though he has schizophrenia, to outweigh the evidence that he was legally sane at the time of the shooting. This wasn’t good news for Holmes. The final phase of sentencing would include victim testimony, and then the jury would retire again for this final phase, to decide if Holmes deserved the death penalty.When the final sentencing verdict was read, I cried. Instead of the death penalty, Holmes was given life without the possibility of parole. A juror spokesman related afterward that a single juror refused the death penalty as an option. One out of seventeen. This lone juror’s refusal to put Holmes to death is probably the only reason Holmes was spared.My son was seriously mentally ill with paranoid schizophrenia for seven years before he died at age 23 of heart failure. If I could say anything to the Lone Juror, here’s what I would tell him or her:Thank you for sparing James Holmes’s life. By refusing to agree to the death penalty, you reminded us all of some important things we used to know as a nation but seem to have completely forgotten in the last 40 years.With over one million seriously mentally ill men and women in our prisons, we forgot that being mentally ill isn’t a crime. We forgot that mental illness comes with behaviors we don’t like, but which are driven by illness. We forgot that a person’s deeds sometimes aren’t “himself.” We forgot that being mentally ill isn’t a moral issue. Mental illness is just that: illness. We used to know it was illness, treat it as illness, “believe in it” as illness. Mental illness is real. Untreated mental illness can be debilitating, progressive, ruinous. Thank you for reminding us of this.You reminded us that all people have value, intrinsic value; not just the value we assign them by how much they contribute to the economy. You reminded us that as a nation, we used to think of ourselves as a compassionate, human rights-oriented people. We understood that many people with mental illness could not fend for themselves, support themselves, care for themselves. We understood that while we couldn’t cure it, we could provide benevolent, long term solutions, like custodial care for those most affected. We used to know that people who were sick deserved treatment and weren’t social outcasts for asking for it. We used to know that even chronically sick people, now our homeless population, have value. Thank you for reminding us that all people have value.We have forgotten that treatment matters more than any single thing in a desperately ill person’s life. We evolved into a culture where it’s okay to ask for help with any disease except mental illness. With every mass shooting that we trace to untreated mental illness, with neighbors and friends all saying they saw a need for help, we grow more and more callous to the idea of treatment. The national chorus after a tragedy is, “why didn’t he get treatment?” By refusing to put James Holmes to death, you reminded us that he could have been saved by treatment. And you’ve shone a light on the very real deficits this country faces with our broken mental health system and very real barriers to care. Thank you for shining this light.What you reminded us of as a nation by refusing to send James Holmes to his death is that our justice system, often described as broken and corrupt, works once in a while. You reminded us that Justice should be tempered with Mercy, that our best legal precepts still work: Innocent until proven guilty, mitigating circumstances, punishments that fit the crimes. We used to know that justice was separate from revenge. This is an important lesson.Finally, we have forgotten that one person can make a difference. One person’s vote can alter nearly impossible circumstances; it can defy the odds and create change. One person’s refusal to do something that is against his moral judgment can matter more than 16 other people’s wrong opinions, or ten thousand’s. You showed us that in our best incarnation of ourselves as Americans, we used to believe this: One person can make a difference. One vote can make a difference. Thank you for reminding us of this truth.From the mother of a beautiful son who was stricken with paranoid schizophrenia, the same disease that James Holmes has, thank you. I know you would have done the same thing for my son.Laura Pogliano***Dear Juror:I am the mother of a child who has serious mental illness, and I wanted to thank you for allowing James Holmes’ parents to keep their son alive. I know the pressure must have been very hard on you to vote for the death penalty, and I want you to know that I think you made the right decision. I know that what James Holmes did because of his disease was horrible, and my heart goes out to the victims and their families, but I also know that James and his family are also victims. They are victims of a mental health care system that is not only broken, but shattered. I know from experience that it is almost impossible to get treatment for patients with mental illness who cannot recognize their own illness. In this case, the fact that James did know and tried so desperately to get help shows that the system is even more broken than one might think. I stand with his parents and the parents of all people who have mental illness in the United States. We are trying desperately to help others understand the need for treatment before these tragedies happen. I am grateful to you for allowing James Holmes’s parents to escape the horror of knowing their son would be put to death because of his illness. I honestly believe with all my heart that this tragedy could have been prevented if someone would have listened and helped him to get the treatment that he so desperately needed. I am forever grateful to you for standing your ground and voting your conscience, for whatever reason, and for allowing his parents to keep their son alive. You made the right decision. Thank you from the bottom of my broken heart.Diana L. Mandrell

Tuesday, August 4, 2015

The Price of Silence: A Mom's Perspective
on Mental Illness, is now available in
paperback.

Six Lessons I Learned in My Ten Year Quest for Treatment

In December 2012, after a tragic school shooting in Newtown,
I thought I was the only mother in America who asked myself, “What if that’s my
son someday?” It turns out I was far from alone. Every single day since I
shared my family’s struggle in a blog post, “I Am Adam Lanza’s Mother,” nearly
three years ago, at least one parent has reached out to me with a similar story
of trying to get mental health care in a broken and fragmented system. I wanted
answers—not only for my son, but for millions of other children and families
who are struggling. As I researched the problem for my book, The Price of Silence, I also found some answers. These are six things I learned during my
family’s long and painful journey toward treatment and hope.

1. Speak up. You are your child’s most powerful advocate. Too
many parents of children who have mental illness suffer in shame and silence,
or are even in denial about their child’s illness. If your child is very young
and exhibits behaviors that seem abnormal—frequent night terrors, excessive
tantrums, or sensitivity to noise, for example—talk to your pediatrician, and
ask for a referral to a specialist. If a medical professional tells you, “Oh,
he’s just a boy,” or “She’ll grow out of it,” get another opinion. If your
adolescent comes to you with mental health concerns, always take them
seriously. More than 4,600 young people ages 10-24 die by suicide each year.

2. Find support and resources. Your local NAMI or Federation of
Families can be a great place to start. Organizations like ChildMind.org,
AtWitsEnd.org, and Understood.org connect parents with information and
resources as well. Finally, Facebook groups can provide comfort and a safe
space to share your challenges with people who understand. To protect their members,
many of these groups are secret, but you can message me, and I’ll connect you.

3. Explore multiple treatment options. While medications are an
important tool in treating mental illness, they don’t work the same way for
everyone, and some have serious side effects. Educate yourself about the risks
and benefits, and work with your child’s doctor to identify the most effective
treatments. Many children who have mental illness also benefit from other
therapies. Young children might do well with Parent-Child Interaction Therapy.
Applied Behavior Analysis has been successful with children who have autism. My
son benefits greatly from traditional psychotherapy, which helps him to manage
the anxiety he feels because of his bipolar disorder, and from occupational therapy,
which helps him with his sensory processing issues. And his smart phone has
also been a useful tool for him, helping him with everything from medication
adherence to stress management.

4. Work with your child’s school to ensure that he or she has
educational support. Children who have mental illness, especially those who
live in poverty, are too often shunted into a school-to-prison pipeline that
denies them a meaningful future. Your child has the right to a free and
appropriate public education. The school district should work with your child
to provide accommodations and supports that will enable your child to learn and
develop. Note: special education can be baffling for parents. I recommend a
consultation with a disability rights attorney or professional special
education advocate who can walk you through the process.

5. Take care of yourself. Caregivers of children with mental
illness report stress levels similar to combat soldiers. It can be hard to manage
the financial stress of costly therapies and complex treatment schedules. In
fact, respite care is one of the services that parents most frequently report
they need. Take time for yourself every single day, even if it’s just a
15-minute walk or a few minutes to journal. It will make you a better caregiver
for your child.

6. Never give up hope. When I shared my family’s story after
the Newtown tragedy, I felt helpless and hopeless. But because I spoke up, my
son got the help he needed. He has not made any threats of harm to himself or
others for more than two years, since his last hospitalization in May 2013. He
is back in a mainstream school earning good grades, and he just finished
writing his third novel. Most important, my now 15-year-old son has really taken
charge of his illness and is becoming a powerful advocate for himself and for
others. When we accepted a joint advocacy award from Idaho Federation of
Families in 2013, he said this: “I’m not a politician. I don’t give speeches.
But I do know this: The stigma and discrimination against people with mental
illness has got to end.”

It took us ten years to find the right treatment. And our
story is not over. I do not think that anyone would say that a diagnosis of
bipolar disorder is a “happy ending” for a child. But it is an answer, and it
provided a path for us. As we follow that path, I have every hope that my son
will live the happy, productive life that he—and every child—deserves.

About Me

Liza Long, aka the Anarchist Soccer Mom, is a writer, educator, mental health advocate, and mother of four children. She loves her Steinway, her husband, her kids,and her day job, not necessarily in that order. Her book "The Price of Silence: A Mom's Perspective on Mental Illness" from Hudson Street Press is available in bookstores and online. The views expressed on this blog are entirely her own and in no way reflect the views of her employer (or anyone else, for that matter).